ME/CFS and holding down a job

Hi Carly,

I worked full time up until 2014 when I was forced to go part time due to my constant fatigue. I am lucky that I own a business with my daughter and she now does the majority of the work and at times all of it when I'm unable to leave my bed.

Here in the UK it is not easy to get any help financially with CFS/ME as your diagnosis. I have never personally tried but spoke to several people at a support group who were denied even basis PIP.

What country are you in?

Sarah

Carly. if you do not sleep deeply at night take a few soma before bedtime only. manage nutritional meals if possible. getting older is not for the faint of heart.

I've had ME / CFS for over 20 years and other than the first few years where I was off sick for most of the time (I was in the military at the time which I subsequently had to leave because of being ill) I have managed to keep working full time ... but only by vastly downgrading the sort of job I do. I've gone from doing a highly specialised intense job doing 12 hours shifts in the military down to PA roles down to secretarial roles down to administrator and now down to a basic typing job (which isn't particularly busy) as each job got too busy / stressful. For me, the mental benefit of being able to work full time in this type of job is much better than trying to do more complex jobs that eventually become too much for me. Its hard to admit that your illness has won and stopped you working, so this is the best compromise for me. Good luck x

Hi Carly,

I’m sorry to hear you are struggling. Luckily I was self employed when it started in 2008 so could work round it a little, cutting down my hours became more & more until finally I hit a brick wall in 2013 with a massive relapse (from pushing too hard) i have never returned to the same level I was before, so never been able to return to work since sadly. (I loved my job) I am still mostly house & bed bound. It is very hard to find a balance. Do you have an understanding boss? Could you cut more hours or change to lighter duties? Or work from home if your job warrants it?

Being self employed at the time I had no income for a while as I thought it was just a blip, but after 4 months I realised I had to claim benefits as i’d made no improvement. It took a while to come thorough but was backdated. I got ESA (employment & support allowance) I was also told I could claim PIP and have had no problems. (I live in the U.K.) I’m hoping that once they change the nice guidelines & the condition is more recognised it won’t be so hard for people who really need it. If you were turned down for PIP & your circumstances have changed e.g you become worse you should try to claim again. i believe the m.e association has some good information on their website that can help with the process of claiming. It helps if you have an understanding GP (very rare) or therapist from the m.e clinic for example who can write a letter of support for you.

I really feel for you. It can be so frustrating.

HI. I had the same problem as had to sleep every afternoon for 5 years! I am 48 and very active.

Anyhow the dealbraker for me was probiotic - after taking it for 1 month the tiredness went completely

I take Symprove which is available online but there is a good choice out there

GOOD LUCK!

Bettina

I've had CFS symptoms all my life and never could hold down a full time job. I was officially diagnosed 4 years ago when I was struggling with a part time administrative job at my church. It was extremely stressful even tho it was part time. After a car accident I had to cut my hours from 24 to 15 per week. But the continued stress of the job and losing my condo cuz I couldn't pay the bills and take of myself led to me becoming pretty much bed bound. I moved in with my parents and I now work about 5-6 hours per week from home. I am not bed bound any longer so I also search around the neighborhood on garbage day for things that people set out that I can clean up, repair and sell on ebay. I have tried 3 times to get disability and I've been turned down all 3 times. I have one more try left and the court date won't be for another year.

Take care of yourself. If I could do it differently I would have never taken on the administrative job. My gut said "Don't do it" but my mind said "You have to be responsible and pay the bills and not be "lazy." Ya da ya da ya da. If I had listened to my gut, I may have dodged a bullet and avoided the depth of illness I experienced which I've only marginally healed from so far. Then again, we learn the hard way! Good luck!

I lost my job in December 2014 then became ill the following march whilst out of work. December 2018 and i was awarded disability benefit after one failed attempt to get it and over 3 years of trying. I had to give up my home and move back into my parents where i still am. Getting disability benefit in the UK for this illness is no easy thing but if i was to do a job it would certainly make me worse. You will need a very understanding doctor with regular appointmens so they know exactly what you are going through then if you have to stop working i would hope that you get treated fairly by the DWP when asking for benefits. If you go down the benefits route you need to make sure you portray yourself at your worst every single time, if you can even go out for a short walk each day and nothing else they will take that as evidence you can work. Good luck.